Hello, again! John here: a 46 year old stay at home dad. Non-ischemic cardiomyopathy coupled with poor eating & exercise habits led to heart failure in 2014, a little over a decade after initial discovery of cardiomyopathy. This necessitated an implantable cardioverter defibrillator with cardiac-resynchronization therapy. Discovery of short episodes of AFib during NIPS testing. New EP monitoring episodes of AFib since 2015.

On August 18, 2017 I received my first shocks after my defibrillator was "fooled" into thinking my heart was in a dangerous rhthym. Unaware that I was experiencing an episode of AFib while exerting myself in the front yard, a "perfect storm," as my EP put it, struck and struck hard! My lower ventricles attempted to keep pace with the artia, which my Medtronic Viva Quad XT CRT-D read as a dangerous rhythm (if anyone out there can describe to me in even greater detail what the doctor mentioned above, I'd be thrilled to hear another version of the events/explanation...I think multiple perspectives often offer a patient a chance to understand the mechanics of their problem/condition on a deeper level).

This was my first experience with 'therapy', and, to be honest, it took me several seconds to recognize it as such. I thought something had struck my head, as there were Municipal Employees working nearby with a small crane to remove the yard waste I was scrambling to gather for them. As I walked backed to a chair in my yard, the ICD fired again. At this point, I shouted out to the workers for help, directing them to call 911. After a third strike, anxiety, then panic, began to take hold. I had no idea what was happening. I experienced no symptoms prior to the first shock, simply the expected winded sensation one might feel after vigorous activity (Incidentally, I had worked this intensely before without incident). In fact, I had actually slowed my work pace down considerbly prior to the first 35 Joule burst.

My wife had just pulled out of the drive 20 minutes prior, to collect the kids from school. I was attempting to text her, telling her not to come home, when the device fired again and knocked the phone from my hand. When I reached for the phone a few feet away, it was down and wouldn't turn on again...ever again. It had been having problems, but something happened to it during the event. Fortunately, my neighbor, Kelly, stepped up at this point. I gave him my wife's number, the message that she make a detour, and he did the rest. Meanwhile, the Municipal Worker, remained nearby delivering info to the 911 agent. I remember him saying that the frequency of shocks delivered was increasing and that I was turning very pale.

Try as I might, I simply could not slow my heart rate. I felt utterly helpless. Again, not knowing what was happening or why, and not having read any literature on the mechanics of 'therapy' and how to respond to it in the moment, what the heart is capable of sustaining, or, what role nearby muscles play in the experience and sensation of pain, I thought, "This is it. I am going to die today...right here, right now!"

My defibrillator fired another 20+ times in nearly as many minutes including 2 or 3 times from the moment the paramedics arrived. Two Valsalva movements, some Versett, air conditioning and finally getting underway calmed me, and dropped the heart rate below the shocking threshold. Fortunately my EP was on duty and rushed down to the ER where he identified AFib as the source of the problem. The machine was turned off for a few minutes reset from a 188bpm threshold to 200bpm while they loaded me up with Amiodarone. An atrial ablation followed on October 2, 2017.

I attended my first ICD support group on September 9, 2017 at Vanderbilt Medical Center here in Nashville, TN, USA. The group refers to themselves as The Vanderbilt Shockers -- what a name, eh? The doctor addressing the group that day gave an excellent presentation on the History of Defibrillation. After hearing my story, what he termed a "nightmare scenario," he suggested, with a gentle pat on back, that I take all the Xanax my EP was courteous enough to prescribe.

That's me story mateys. And while it's often a straightforward case of poor machinery -- whether electrical or plumbing -- I say, be on the look out for whales and mind your inner Ahab, for both be beasts layered with anger, impatience, envy, dreaded vengeance...and good intentions! In other words, "Take 'er easy, Dudes!"

P.S.
Let me say, too: I am sobered and humbled as I read more and more of the stories here. While I do have it bad and need to come out of denial (still smoking, drinking the occasional drink, and eating like there's no tomorrow) I've thrown a few too many pity parties for myself. Sites like this are providing a great deal of perspective on my experience with the ICD and health in general, and will, in time, turn the energy expended on self-pity and denial into something more useful.

Hi,
My name is Gina. On 12/14/17 I went to my GP with what I thought might be a inner ear infection. I had been experiencing lightheartedness and feeling easily winded. Before I had time to even think, they had called an ambulance to take me to the hospital because I was experiencing ventricular tachycardia. They admitted me, did some testing (echocardiogram, stress test, blood, etc). They started me on Magnesium and a beta blocker and sent me home the next evening. The next day I ended up back in the ER with same symptoms. They again admitted me for ventricular tachycardia. I went through more testing and apparently along with VT, I have non ischemic cardiomyopathy. They start me on meds. The meds lower my heat rate so they decide to implant a pacemaker/defib. Once that's in, they are able to control the VT with meds and the pacemaker manages my heat rate. They don't know why this happened, possible virus, but from what I can tell that's the default answer. I was released from the hospital on 12/22/17. I've been feeling OK, tired. Find my emotions are a bit up and down. I had the first Dr Appt to check my implant and apparently no VT; the pacemaker is correcting 85% of the time.
I am 61 and have 2 daughters (31 & 2 yrs old), and a grandson. I am married, and my wife is 19 years younger. This feels like it came out of nowhere and I am still reeling, worried, hopeful and tired. Glad to have found this forum. Reading people's stories makes me feel less alone and more hopeful.

Hello everyone. Nice to meet you all. I have been lurking for a few months and am finally joining in. My name is Maureen and I currently live in southeastern Virginia. My husband Tom and I moved here 11 years ago from San Diego, which I consider home.

In November 2013, I was having stomach pain and an MRI showed a growth on the spleen. That turned out to be cancer - of unknown primary as it turns out, stage IV. I was set up with an Oncologist but before I could start chemo, I found a lump in my breast It was biopsied and it too was cancer, just not the same type as on the spleen. I began what turned out to be 3 years of weekly chemo. I had rheumatic fever as a child which had left me with a damaged heart but had lived my life up to this point (over 60years) with no problem. My oncologist sent me to a cardiologist since all I really knew was that I had a LBBB. The cardiologist ran some tests and said I had cardiomyopathy but that I did not need to do anything about it. I finally end up in the hospital with what I am being told is pneumonia. Lungs are full of fluid and I feel like I am dying. After 6 days a lung specialist comes in and says the problem is not the lungs but heart. They had done a MUGA and my EF was 15%. The next day my cardiologist comes in and I tell him what the lung doctor said. I then asked what I should do about the heart from this point on. He patted my hand and said to just keep doing what I have been doing!! The next day I got a referral to a new cardiologist. I saw him as soon as I got out of the hospital and what an eye opener. Put on medication, salt restriction diet and limited liquids. I had always been a saltaholic so I was not a happy camper, but I followed directions. When I returned 3 months later he was surprised and said he had not thought I would make it. We did another MUGA and I am up to 25%! It was then that he said I needed an ICD and set me up with an EP. The ICD was implanted the end of November 2017. It was a piece of cake, a couple days of discomfort and that was it. I had found this forum and so I knew about raising the arm - thank you! There was one problem with the implant, they could only hook up 2 of the wires and will have to go back and hook up the third one going through the ribs.
Meanwhile, I was having a lot of digestive problems and my weight went down to 99 lbs. After testing they found my pancreas was not producing the enzymes to digest food. So now I take the enzymes in pill form. That helped the digestive problems but did not solve it completely. So more tests and it is determined I also have Gastroparesis. So now I have to limit fats, and I cannot eat fiber or vegetables. My diet is basically everything you are told not to eat. I have found low sodium cheese so I have a lot of pasta with cheese! My GP checked my cholesterol last month and said he wished every patient could have my cholesterol numbers!
Sorry to have rambled on so long - I really did try to make it the Readers Digest version. My weight is up to 103, my BP is low and I am slowly gaining strength. I have LBBB, DCM, CHF. I take lots of medications - Creon, Klor-Con, Magnesium, Lasix, Carvedilol, Pantoprazole, Folic Acid, Ferrous Sulfate, Anastrozole, Aldactone, Lisinopril, Levothyroxine, Vitamin B-12 and baby aspirin. I also get Opdivo for the cancer every 2 weeks.

I told the nurses when I got the ICD that it was a good thing it was being put in on the left side of the chest because I had been walking around leaning to the right ever since my port was put in on the right side. Now I stand up straight!

My ICD, by the way, is a St. Jude Latuda. I have learned so much reading the posts on here and I hope to learn a lot more. Thank you all for being here!

Hello All
I have been exploring the board for a while and wanted to jump in and say thanks to all for the great information that is here.
My story is similar to others. I have been having issues of lightheadedness and generally not feeling well for a long time. I had doctors tell me it was all in my head, another tell me that I was just getting older and this happens to people as they get older. Finally I had a great Dr who told me that we need to get to the bottom of the problem. He thought it could be heart related so ordered a Stress test which was normal. Early in 2017 I passed out at work and ended up at the ER. Where I was sent back the a cardiologist for another stress test which was normal but he didn’t want to give up and he referred me to an EP. Then I ended up with a 30 day heart monitor that showed some PVC and that was all. The EP was not satisfied and so the end of April 2017 did and EP study which was normal so he put in a loop recorder (which insurance does not want to pay – am fighting but have a $17,000 bull hanging over my head). The loop recorder picked up a few instances of non-sustained VT.
On Sept 22 2017 at 6:15 was sitting down for dinner with my wonderful wife and I felt my heart racing and after 5 minutes it didn’t stop like before. She called 911 and the when the EMT got there I was in VT. My BP started to drop rapidly so they had to shock me in the ambulance before they could sedate me. Took me out of VT and went into A-fib. Well after 5 days in the hospital and Angiogram (clean), Cardiac MRI (normal), and another EP study that could not reproduce the VT.
My rewarded (sarcasm) with the diagnosis of Idiopathic VT and my Prize a Medtronic ICD with 2 leads and 120 mg Sotalol every 12 hours.
Still trying to get my head around what’s going on in my heart and dealing with the side effects of the drug. I am blessed to be here and very blessed to have my wife to support me. I just hate being a burden. This board provides excellent information and support. Sorry for being so long winded.
Doug

Hi everyone! I just found this group today and I’m very excited! My name is Shay and I’m 36. Here’s my story! When I was 21 it was discovered that I had a bad mitral valve so I had to have surgery to have it repaired. Even after the repair and the doctors told me I would feel better I still didn’t feel right. Fast forward to May 2016. I was up camping with a bunch of friends and we had been to the rodeo that day. That morning I had been really really sick and we didn’t really know why. After the rodeo we went back to the campground and upon arrival I Collapsed and started seizing. After my seizing had stopped the eyes roll back in my head and I started to turn blue.my heart had suddenly quit. Luckily two of the girls that were there whom I had never met before jumped on top of me and started CPR. The continued CPR until the sheriff arrived and took over and then the ambulance arrived. After that they loaded me into the ambulance and they had to shock me back twice . I was then driven about 45 minutes down the road and taken by helicopter back into the nearest large town. I spent two weeks in the hospital and they discovered that I had a very rare defect of my heart called ALCAPA. Basically the left side of my heart had never been receiving oxygenated blood. Very strange that they didn’t catch it with my first surgery but apparently the statistic is 90% of people born with it don’t make it out of their first year of infancy so, my dr. had no reason to look on that side of my heart. I then had to be taken to Salt Lake City where they did open heart surgery to fix the defect and they placed a subcutaneous ICD on my left side. We still don’t know if my sudden cardiac event was linked to the heart malformation or if something else was going on so the ICD is really just a precaution. I’m really hoping to get out of this group some feedback from others who are dealing with this, specifically women. I have found that my ICD because of where it sits is very very hard to wear a bra comfortably. I know that sounds weird but I was wondering if anyone else has pain while wearing a bra or, just has pain in general! Sometimes it’s perfectly fine and other times it really hurts, Just kind of like an achy pain. My two year ICD anniversary will be May 7 of this year. I look forward to hearing from you guys and seeing what your experiences have been like!

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Hi my name is Patty I. Have had my icd about 3 weeks now after cardiac arrest. Dr.'s have no idea what caused this although was still recommends icd. I am new and have so many questions and fears. Starting with my chances of having another such episode? Will my implant shoulder always feel so tight and uncomfortable? Would appreciate others experience

I'm a UK national but I am in Australia on a 4 month business trip (or at least I was). On the 27th January 2018, I was learning scuba diving and about 2 hours into the first pool session when I suffered a cardiac arrest. Quick action by the trainers meant that I dragged out of the pool and CPR was started within a minute. The pool's AED was brought and it gave me 3 shocks. I came round whilst CPR was still being performed (I thought someone was assaulting me). Paramedics were on the scene by then and I was quickly taken to the hospital and to the emergency department. I was in AF on arrival at the hospital but conscious and stayed that way for 4 or 5 hours before I returned to a sinus rhythm.

There was no warning or prior history and no family history.

Then came the tests: Angiogram - no abnormalities, Echo-cardiogram - no abnormalities, EPS - no abnormalities, MRI - no abnormalities. So at least, in general, my heart and arteries are healthy.

Since no reversible cause could be found they implanted a Medtronic Visio AF XT MRI with a single lead on 12 February. I was discharged the following day and I'm now recuperating in Sydney waiting for the doctor to tell the insurance company that I'm fit to fly so I can fly back from the warmth to the cold.

Given that I was due to go in the ocean that afternoon (when my chance of being pulled out and revived would have been much slimmer) and that I spend a lot of time walking, running, cycling and swimming on my own in remote areas, I feel incredibly lucky that this event happened where there were several trained CPR present and an AED and it was close to a hospital (ambulance was there very fast).

I felt fine in the hospital but I think my memory and mental capacity seems slightly reduced (scored 25 on the Montreal test - which is just below the normal range but that was less than 24 hours after the general anaesthetic) but it is already getting better. Also since the surgery I get tired very quickly - just typing this probably means I'll need to rest for a couple of hours.

Anyway it's good to find a supportive and informative community.

Oh and I turned 50 5 days after the surgery.

Cheers
John this is tough as I'm short, left handed and they've implanted on the left.

Hello everyone I'm Steven Mimms an I'm 44 years old. I'm really happy to find this support group. I live in Clarksville Tennessee where I'm married to my beautiful Queen Tonya. I'll raised six children from 25 the oldest to my 11year. I was diagnosed with Afib in 2003 which was very shocking to me at the age of 28 years old. I was at work when I began to get light head. I went to the nurse station at work and she put me on the EKG machine and discovered my heart was irregular. Went to the hospital and the rest is history. I live with Afib for many years and it was a nightmare. The feeling I got from an attack was scary. Many years later, I wanted to try an ablation in March 2017. The surgery went well and I felt like a normal person. Around August I started to feel bad, my stomach hurts and was nausea. My body was weak and I was tired. The next month it got really bad so I went to the hospital. My EKG was normal but that couldn't be right because of the way I felt. Got back to my room and I noticed the machine kept beeping. The nurse ask, " does your heart rate often drop in the 60's". I applied no ma'am. Nevertheless they sent me home with the diagnosis of acid reflux. I still felt bad so I called and made a appointment with my family doctor. I went that Friday where she also ran an EKG but ran an level 3 where the hospital ran an level 2. She found out I had a stage 2 heart block. She made me an emergency referral to a specialist. Unfortunately the heart block got worse over the weekend and that Sunday my heart rate drop into the 40's. Thank God my wife was at home where I went into cardiac arrest. I laid in bed lifeless looking at my family but my wife is my hero because she held my hand and talked to me until the paramedics arrive. Rush me to the hospital where I spent 3 days and unfortunately one of those days was our anniversary . They placed the pacemaker which had changed my life forever. I'm very thankful for the doctors, prayers, Families and of course God. I'm blessed to find this support group and looking forward to hearing from everyone.

My name is Jeannie and I hope that I do this right! I am 48 years old and I have Moderate left ventricular systolic dysfunction, Paroxysmal SVT (supraventricular tachycardia), Left bundle branch block, and an ejection fraction of 34%... I also have Multiple Sclerosis.

I am getting an ICD on Tuesday and I am petrified. I searched for online support groups and came across this one so here I am!

Hi, I am a 45 yo female. I have had an ICD for 19 years. I am on my third one. With the first, I had many shocks, I think 15. The trauma from them was severe. I developed a mental illness. Today I am taking a beta blocker which has kept me from getting shocked. I am very grateful. The anxiety from anticipating a shock is debilitating. I did heal from the trauma. I saw the stored energy exit my system. It was in the shape of a skull and spinal cord. I believe it was the trauma exiting, but I was diagnosed with schizoaffective disorder. I do “see” and sense energy. I also have found a medication that has neutralized my mental illness. I am eternally grateful for modern medicine, including my ICD. I blacked out 5 times with v tach before I was diagnosed, and got the implant. So lucky it was nonsustained, I survived. I am a registered nurse and a massage therapist. I currently am working as a caregiver. Haven’t done nursing for 10 years. Would like to get back in the field.

Hello All
I have been exploring the board for a while and wanted to jump in and say thanks to all for the great information that is here.
My story is similar to others. I have been having issues of lightheadedness and generally not feeling well for a long time. I had doctors tell me it was all in my head, another tell me that I was just getting older and this happens to people as they get older. Finally I had a great Dr who told me that we need to get to the bottom of the problem. He thought it could be heart related so ordered a Stress test which was normal. Early in 2017 I passed out at work and ended up at the ER. Where I was sent back the a cardiologist for another stress test which was normal but he didn’t want to give up and he referred me to an EP. Then I ended up with a 30 day heart monitor that showed some PVC and that was all. The EP was not satisfied and so the end of April 2017 did and EP study which was normal so he put in a loop recorder (which insurance does not want to pay – am fighting but have a $17,000 bull hanging over my head). The loop recorder picked up a few instances of non-sustained VT.
On Sept 22 2017 at 6:15 was sitting down for dinner with my wonderful wife and I felt my heart racing and after 5 minutes it didn’t stop like before. She called 911 and the when the EMT got there I was in VT. My BP started to drop rapidly so they had to shock me in the ambulance before they could sedate me. Took me out of VT and went into A-fib. Well after 5 days in the hospital and Angiogram (clean), Cardiac MRI (normal), and another EP study that could not reproduce the VT.
My rewarded (sarcasm) with the diagnosis of Idiopathic VT and my Prize a Medtronic ICD with 2 leads and 120 mg Sotalol every 12 hours.
Still trying to get my head around what’s going on in my heart and dealing with the side effects of the drug. I am blessed to be here and very blessed to have my wife to support me. I just hate being a burden. This board provides excellent information and support. Sorry for being so long winded.
Doug

Mine is also idiopathic VT. Luckily non sustained.also Polymorphic, so ablation is not an option. I happened to have a few beats of it during my second tilt table test. I think it is good they gave you an ICD. Interesting they are not covering the loop recorder. Almost had one for my son but he refused. Aster77

Newbies...this site is set up a bit oddly I would admit. This is the introduction thread but once you've posted an introduction please use the "TOPICS" section below to post threads and discussions. I dunno why it's set up this way but it is and I'm just a tourist so...not my say

Hello, my name is Lisa. I am 44 years old. I live in Oshawa, Ontartio, Canada. I have cardiomyopathy. I will try to make my story brief. I was diagnosed with Leukemia in 1991. I had many procedures, including a bone marrow transplant which involved heavy chemo and full body radiation. Transplant failed and they had to treat me with more chemo. This, in turn damaged my heart. Doctors told me I would not live another year without coming out of remission but the good Lord gave me a miracle and I am still alive today.

Many years later now, and 8 months ago, I formed a clot in my right atrium which released into my kidney. I now have 30% function from whatever is left of my kidneys. I was doing very poorly until they decided to put in an internal defibrillator (CRT-D) in January and they changed my heart medication. I was doing very well and feeling really good up until a month ago. I was walking my dog and went into atrial fibrillation which set off my defibrillator. I was shocked 23 times in a half hour time until they could get me to emerg via ambulance where they put me on a 24-hour Amiodarone drip to slow down my heart. It was racing at 250 bpm. It was the scariest thing I have ever been through in my entire life and I have been through a lot. They kept me on Amiodarone, 3 pills per day and now I am on one pill per day.

So, now my prayer is that the atrial fibrillation will stop. Whenever I feel that anything is happening in my chest area, I go into panic mode and think I will get shocked again even though the doctors have changed the settings on the defibrillator and assure me that I won't get shocked again unless absolutely necessary to save my life. I have gone into AFib twice since coming out of the hospital, just last weekend, 2 evenings in a row. No shocks this time. I hyperventilate and have to use my breathing exercises to calm down. I also pray A LOT!

Lisa.jpg

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Hi everyone, I'm Min. Glad to have found a support group for ICD patients from which I think I'l learn a lot about living with an ICD. I'm wary of disclosing too much, but here's my story anyway:

32yo Asian male presented with syncope while playing video games, losing consciousness for about a minute and then woke up on my own with multiple facial lacerations. At hospital, EKG showed a "strong" and "classic"/"textbook" Brugada pattern, combined with syncope led to Brugada Syndrome diagnosis. No history of prior syncope (other than 2 drunken falls and 1 sober fall--never lost consciousness--all of which happened about 10+/-3 years prior this syncope episode, which at those times I attributed them to orthostatic hypotension). Only family history of note is maternal grandfather who passed in his 40's from stroke following several episodes of fainting (it was only after digging that I learned about fainting, leading me to believe a/v/tach/fib was possibly involved). Genetic testing TBD. Other past medical history include a spontaneous pneumothorax in 2012 which led to lung resection and pleurodesis. Abnormal EKG's were noted at the time but not diagnosed (anemia and low blood pressure were detected, treated with folic acid and magnesium). Chronic pain ensued from thoracic surgery, multiple failed therapies including nerve blocks and ablations.

After being admitted for syncope/Brugada, ICD was recommended. I left the hospital to seek additional advice, and after speaking with several EP's and friends who are cardiologists, they all recommended I go through with the ICD. Yesterday, I received an Boston Scientific S-ICD (will include exact model soon) and was discharged the same day.

My experience of the implant was that the location of device implant did not cause any pain, but the area with a small incision through which they anchored the lead was incredibly painful and continued bleeding for a while. The pain was up there with chest tube and nerve blocks w/o anesthesia (but not as bad as nerve ablation w/o anesthesia). Pain eventually subsided in an hour or so. Once that pain subsided, I was surprised by how little discomfort I was in, especially considering that the device was placed in the same location where the incisions were made for lung resection. I felt well enough to go home so I was discharged.

Now it's the day after the surgery and I'm mostly just sore. Moving into certain positions (e.g., bending over) seems to cause pain where the leads are. Hoping this will subside soon. All in all the experience was much less painful than I had feared, especially since I'm incredibly underweight and thin, and had previous incisions in the area of device implant that resulted in chronic pain.

I was sent home with a "Latitude" device that's supposed to send data to Boston Scientific that my doctor can later access. However, I'm irked by the fact that I cannot access data from the S-ICD. I'm going to look into HIPPA and other such laws to compel patient access to his/her own health data. I also plan on investigating security issues with the device such as making sure the device communicates in a safe frequency band and the level/type of encryption of data stored on the device. I will post in separate thread when I get around to this.